A/HRC/37/57 the United Republic of Tanzania, which has been a prime beneficiary of multiple interventions on the issue, and consequently accounts for a significant amount of data on the matter, it has been reported that half the population of persons with albinism “will develop advanced skin cancer between 20 and 30 years of age, with less than 2 per cent of albino children in Tanzania living to be 40 years of age”.25 It was also indicated in an earlier study that “chronic skin damage was found in all those with albinism by 12 months of age”.26 In those circumstances, the prospects of having limited or no access to preventive measures and treatments for skin cancer would inevitably lead to premature although preventable death — all of this despite the fact that the susceptibility of the skin of a person with albinism to cancer and other solar damage has been known for at least half century. 27 The risk is exacerbated in sunny climates closer to the equator, but it is still a permanent and universal risk for persons with albinism throughout the world. In Cuba, where persons with albinism enjoy free access to the health system, a small number of cases of skin cancer are reported.28 37. In poor countries, “sunscreens are prohibitively expensive, leading to a focus on sun avoidance and protection from an early age”.29 At schools in sunny climates, sun exposure may also differ between boys and girls as they tend to have different leisure activities and wear different clothes. The Association Ivoirienne pour la Promotion des Femmes Albinos reports that women may be more vulnerable to sun exposure due to the type of clothes they wear and their daily activities, including childcare. In their study of children with albinism in a specialized school in South Africa, Patricia Lund and Julie Taylor observed that boys play football outdoors, while girls prefer activities in shaded areas. In that regard, data collected by the only cancer institute in the United Republic of Tanzania shows that men and boys are significantly overrepresented at their clinic. Thus, a gender perspective is required in devising responses to the susceptibility of persons with albinism to skin cancer. However, it is essential to remember that sunburn and similar damage could still occur in the shade. That is why adequate protective clothes are key in sun avoidance and protection. 38. Outdoor working conditions aggravate the risks and the prevalence of skin cancer among persons with albinism, particularly in rural areas. 30 Limited employment opportunities and vocational training condemn most to outdoor income-generating activities under extended sun exposure. Furthermore, a lack of health facilities and health programmes, including screening and treatment, directly contribute to the high mortality rate of persons with albinism owing to skin cancer. 39. For those who already have skin cancer, treatment is often not available. In Benin, for instance, Connexion Worldwide reports that they are not aware of any specialized centre for screening and treatment of skin cancer. In Uganda, the Source of the Nile Union of Persons with Albinism reports that the only radiotherapy machine in the country has been broken for a long period. Furthermore, the risk of skin cancer is higher when persons with albinism seek help too late after the appearance of the first symptoms, or fail to follow preventive measures or complete their treatment regimen. 31 Factors accounting for those issues include the lack of priority accorded to prevention measures given the need for immediate survival, self-isolation to avoid further stigmatization, fear of attack, lack of information and lack of financial means to cover the cost of transport to health centres and other costs. 25 26 27 28 29 30 31 Geraldine R. McBride, “Oculocutaneous albinism: an African perspective”, p. 11. Patricia M. Lund and Julie S. Taylor, “Lack of adequate sun protection for children with oculocutaneous albinism in South Africa”, BMC Public Health, vol. 8 (2008). A.N. Okoro, “Albinism in Nigeria. A clinical and social study”, British Journal of Dermatology, vol. 93, No. 5 (1975), pp. 485–492. Submission of Cuba. P.M. Lund, “Oculocutaneous albinism in southern Africa”. Submission of Connexion Worldwide. Geraldine R. McBride, “Oculocutaneous albinism: an African perspective”. 9